Wednesday, July 27, 2011

A celebration.

Today is our son Jack's third birthday.

It got off to a quiet start as he has gone to his grandparents house for the day with his dad at 6am so I can get some things done (and to save my back a bit from carrying him).

So let me tell you about Jack.

Jack was born with Cerebral Palsy (CP), although it was not fully diagnosed until he was about 8 months old. His birth was long and I was finally given an epidural but he was born with forceps. He was less than 2.5kg and could not hold his body temperature or suckle and was in the hospital special care nursery for three weeks.

During those long weeks he gradually learned to suckle from both a bottle and breast and finally came home, but it was apparent over several months that he was developmentally delayed. He had poor support of his head, left-sided torticollis (held his head to one side) and he just cried face down into the floor when we tried 'tummy time'. We took him to a kids physio to try to address the torticollis and also his funny shaped head from being squashed inside me. His paediatrician began to talk about hemiplegia and that we would need specialist help for him and put him on the waiting list for Early Childhood Intervention Services (ECIS) and gave us the name of a physio to help until his name came to the top of the list. He was also then diagnosed as having severe CP, with all four limbs involved.

In the meantime I was starting back at work and had to get Jack into childcare. This can be a fraught time for any parent but particularly when your child has a disability. At 12 months Jack could not crawl, either conventionally or 'commando' style, could not sit up or sit independently, or stand. His speech was delayed and physically he was like a 3 month old baby. We got him into a local childcare centre which has turned out to be a godsend for us and for him as their staff and support have been exceptional. He has equipment supplied by Noah's Ark which helps to integrate him into the program as much as possible.

In the meantime we were able to get funding for a standing frame donated by Making A Difference Foundation to get weight into Jack's hips as they were starting to show signs of not developing properly due to lack of standing or walking.  At this time we were trying to establish a cause of Jack's condition, however MRI's and genetic and metabolic tests all came back negative. It was just one of those things. However, we decided we didn't want Jack to be an only child and decided to try to get pregnant again, despite the risks.

After 12 months of anxious waiting, Jack's ECIS came through and we were picked up by Scope, who provided physio, speech and occupational therapy. Their support was excellent, and during this time Jack's speech started to develop and we established a daily routine of physio to try to lengthen his muscles and get him stretching and sitting with some confidence.

After about 6 months with Scope we learnt about the Cerebral Palsy Education Centre, or CPEC, in Glen Waverley and organised a visit. By this time I was about 6 weeks pregnant, and we were conscious of the possibility that our next child could also be affected by CP. The facilities were excellent, however the big hurdle was that acceptance was limited to residents of Eastern Melbourne only. When we left I sat in the car in the carpark and cried. This was the place for Jack. Scope was great, but their extremely limited funding meant Jack only saw a therapist every couple of weeks for an hour and a half at most. CPEC would provide 6 or 7 hours every week. It was no comparison.

We began to write letters to ministers and government departments. We caused a stir, and after a few months got word that the government was changing it's zoning policy for ECIS. Our problem then was that Jack was down the waiting list for CPEC, but we kept pushing, and eventually Jack was accepted at CPEC starting February this year.

By this stage Jack needed Botox and surgery to partly release his abductor muscles in his groin in an attempt to lengthen the muscles and get some more natural movement in his legs. He spent 5 days at the Royal Children's Hospital in Melbourne and came out with his legs in full plaster and a stick separating them. At 5 months pregnant, this was not great timing for me as it meant my husband had to do all the lifting until his plaster came off 4 weeks later, 2 days before Christmas.

Today Jack is still at CPEC and responding extremely well. Despite the fact that there are significant fees (where Scope services are wholly government funded, albeit poorly in my opinion) and we have to drive at least 45 minutes each way to get there (Scope visited at home) it is worth it. He can now commando crawl in his own awkward way and sits with some more confidence. His speech, although still a bit delayed for his age, has improved out of sight and he is a chatterbox and comes out with funny and cheeky things as 3 year olds do. We are still striving for him to walk, and he uses a 'ladder' and walking frame to practise this. Getting to sitting is still a challenge, as is standing independently. But he is in the kinder group at childcare and loves it.

But I do lay in bed at night and think about the future. Schools? Will he be bullied? Will he drive? Get a job? Cope with his disability and see the opportunities? I think about wheelchair sports for him to try. How do we do family holidays with Jack, especially once he is in a wheelchair? Our house is 2 storey - how do we get him upstairs once he's too heavy to lift? I already am starting to feel the strain in my back. These are issues we will work through with all his therapists and specialist and I know there are many people and support groups who can help with the solutions in time.

But mostly we try to stay in the present and deal with immediate issues, like getting funding for a Second Skin and a specialised tricycle for him. He has lots of loving family and friends. The most important thing is that Jack is a sensational child who loves life and my job is to keep it that way by doing the worrying for him and let him get on with what kids do best - just being a kid.

Happy birthday, Jack!

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